Published on 12, July, 2020
Thank you to all of you who responded to my last post.
On a personal level, it's comforting to me to know I am not alone in experiencing these problems. Having been called "delusional" for my medical anxieties in the past by mental health, it is nice to know they are anything but.
On a practical level, I was hearing a number of things in that discussion largely around how to access GPs etc and the absence of reasonable adjustments to communicate with them etc. Clearly, there is a need for a huge amount of training in this regard. There are further issues with respect to the physical and psychological misdiagnoses and unhelpful or inappropriate treatments sometimes arising from professionals' ignorance.
I have also dug into the helpful links provided by Autonomistic on Autistica's work to progress the issue of annual Health Checks, akin to those offered to people with a Learning Disability.
This post is specifically about advocacy.
Given that so many of us have difficulty in self-advocating in medical environments, to the point of not even getting through the GP's door and past the receptionist to self advocate, what are our thoughts specifically with respect to a service to help us get into the surgery and communicate with the GP. (Email can do a lot, but regrettably we can't be physically examined by e-mail. We have to go in sometimes!)
My ex-husband who was a nurse used to advocate for me. He could approach the reception desk for me, make the phone call for me, intervene and explain what the problem was when I could not find the words, explain what was happening when sensory overwhelm was pushing me into shutdown or meltdown, negotiate reasonable adjustments for me, even made medical decisions for me, when I could not.
Without his help now - I'm stuffed. Can't get any health care at all.
It seems to me that what is needed to plug the gap for those who don't have a family member to step in, is some sort of autism expert service embedded into the NHS to advocate even at short notice in emergencies. No such service appears to exist at present. I've been trying to find one for two years. Adult social care won't help, existing advocacy services don't go to GPs appointments with people and it takes weeks to get an advocate anyway and the Learning Disability and Autism Team are only commissioned to be doing this for people with a learning disability.
So, do you think this is a good idea? What would such a service look like to you? What would you want from it? Would this make the difference between getting to and through an appointment for you?
I have basically been trying to find an advocate for two years for my own personal matters (mainly my immediate family not really getting autism despite me having had a diagnosis for 17 years).
I've been afraid to actually do it because I feel like I'm dobbing them in, but I'm at that stage where advocating for myself isn't really working because I can't exactly overcome autism and I'm not getting any more comfortable or confident with it.
It does seem to be a common theme for me; avoiding accessing support out of embarrassment and fear, which doesn't really help me.
Adult social care didn't really do much for me either. If there's any advice anyone has I'd be welcome to it.
How open are your family to engaging? If they are resistant to the idea... might not go anywhere. But there is such a thing as family therapy, if you can find it and they will do it. They would listen to all and help reframe the points made so the others could understand.
I've tried to write things out, but I don't think they've fully taken it in. I feel small every time I try.
There's glimpses here and there but there's been too many cruel things that have been said (even within the last year) that indicates to me that there's not much learning going on.
I don't think they're actively resistant but I haven't found the right approach.
If they knew just how bad I find myself feeling they might approach it differently but I don't know how I'd get that across to them as a starting point.
I'd often think I need to force myself to have a big meltdown or something.
This must be awful for you and it's really sad... But in the end, it take two parties to be willing to talk. If they won't, you can't make them.
I think that's my problem, even approaching them with the idea fills me with dread. I know they'll talk me out of it, they'll tell me about how these services just want to tear families apart (which is what they said the last time I tried to get an advocate and they sent a letter to my house...).
It seems no matter how much I try, I can't get across just how much I've struggled over the years.
"Advocates" generally advocate with services and institutions.
But what you are describing, is similar and - not that I'm an expert or anything - but does sound like the sort of thing a family therapist might do. Why not ask the family if they'd like to explore that?
I wish that was easy to get hold of. I guess my thinking with the advocacy stuff was that someone would basically get the points across to them for me but I don't know if that's even something anyone does.
It does sound like some sort of autism informed family therapy might be a starting point.